Even though my Lupus and my Sjogren's are in remission, he says both diseases can present with tingling. Lupus neuropathy is generally in the large nerves, and presents more as weakness, while Sjogren's neuropathy is in the small nerves, and presents more as pain. Of course, neither presents as episodic like my feet are doing, so...

We wait for another episode, then try to get blood & nerve testing done while the symptoms are present.

The really disappointing thing is that my rheumatologist, who is supposed to KNOW about Lupus & Sjogren's, sent me to a podiatrist and didn't mention (or know?) that both diseases can cause neuropathy.

Hi Lynnwood. My hubby recently brought home a medical publication regarding the lack of communication between physicians. The conclusion was that physicians don't communicate which leaves the patient with the sometimes daunting task of ensuring each doc knows what the other is doing. The article further said patients are sick and often work hard to maintain health yet are given tasks such as transferring records, making appointments for a doc that the initial doc recommends, etc.

All of this may seem off topic, but I wonder if your rheumy even followed up with you regarding your feet. As you know, recently my different docs had me make appointments with other docs and it was up to me to let them know what the other was saying. Thank God hubby came with me to all appts and was able to relate the findings.

Well, at least what you have with your feet is interesting and you are making progress...however slow it is. Love Ya, ButterflakeSLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

I got curious myself about symptoms and which type of nerves are affected. Here is a pretty good article. I know that people with diabetes get both pain, numbness and tingling in their feet. I believe that's a small fiber neuropathy. I think neurologists are good at this but other docs, not so much. They might recognize diabetic nerve pain b/c they see it so much.

Thanks for the article -- it does point out that the small nerves may be affected by SLE and Sjogren's, which is what my neuro said. Unfortunitly, there doesn't seem to be much in the way of treatment.

And of course, now that I have a neuro "on call", so to speak, I haven't had any more episodes. Nerve conduction tests only work once the tingling/pain/etc is constant. :(Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000DIAGNOSING LUPUS & HW's LUPUS 101"Life is far too important to be taken seriously." - Oscar Wilde

It seems to me they are way behind on treatments for Sjogrens when compared to other auto immune diseases like RA. If they could target the problem in our immune system, maybe our saliva glands would start working again. Some people like alpha lipoic acid supplement for neuropathy.

It's a shame you have to be a lot worse to get tests done. That has to be frustrating. I take it they ruled out other causes for your neuropathy like diabetes, smoking, medications, etc....?Sjogrens syndrome 2/15 via lip biopsy:depression, fibromyalgiacolitis-resection 11/10, hashimoto's thyroiditis, morphea, GERDMeds: plaquenil, synthroid, metformin, nexium, restasis, estrogen patch, prometrium, VSL #3, evening primrose oil, alpha lipoic acid.